hi folks,

radiation and chemo in '01.. all routine since then. i've been surprised by the long recovery road that just keeps getting better. recently i've started producing notably more saliva.. yahoo!

i finally learned that mouthwash with hydrogen peroxide works better for me than prescription meds for keeping thrush under control.

despite my best efforts of 4/yr teeth cleaning and brushing\rinsing umteen times per day, i've got receding gums that are to the point where food gets trapped and causes infection...

so 2 lower teeth (19 and 30) are coming out... today i met with the hyperbaric folks and got scheduled for dives in Jan.

overall i am glad to have been able to keep my teeth this long and the docs tell me i'm doing good... so dive and pull.. and get some man made replacements.

i'm open to any tips or advice.

best holiday wishes to everyone.
cu,
larryb

Wow, Tx in 01 and still seeing saliva improvements!! That should give all of us hope.

Why don't you update your Signature Line (like mine) so that everyone reading your posts will know your history each time you comment.

Thanks for the update!!

hi Dave,

the saliva thing has been a surprise to me. for years i took 3 or 4 salagan pills each day. about 18 months ago, my mouth was wet enough that i reduced the intake to 1/d. things were still good and seemed to improve. recently i upped the dosage to 2 or 3/d. i got a big boost. .. enough so that i can now go a few hours without my water bottle. i've even left home without it and not panicked.

my plan is to increase\decrease the dosage on time scales of a couple of months to see what happens. now i can frequently open my mouth and see fluid spanning from the roof to my tongue.

i still can't eat most thing without drinking something.. but i really do sense a continued improvement.

this seems contrary to what i've read and been told about saliva improvement after treatment... i switched to generic salagen and found no noticeable difference.

Hi Larry,
My husband is also experiencing problems with tooth 30 thanks to osteonecrosis. Oral surgeon wants to pull it out but he must have HBO treatments first. Talked to his radiation oncologist who had us meet with UCLA dentist who works with H&N patients on teeth problems. Discussed HBO, but he recommended a special root canal procedure. Husband spent 10 hours in dentist chair enduring procedure. Pain eased a little for a few days, but it is now back big time. If I may ask, will your medical insurance cover the HBO? We lost our dental insurance Dec 1. I am hoping he can take HBO as he has high blood pressure and a blockage in his neck on side of dissection. They cannot operate as veins are too close to the skin, so he is now on medication. This is a good man who has suffered so much since diagnosis in 2003. In 2006 he was diagnosed with CLL, but he is still in stage 0. Dr. figures he may have to start chemo late next year. We are thankful for every day we have together.

I wish you the very best of luck with your HBO treatments. My sister had HBO for a bad wound. She did have to have tubes in her ears to relieve the pressure and her eyesight was affected for a few months. But the treatment was a success!

All the best,
Siouxbee

hi Siouxbee,

it is unclear if insurance will pay. the hospital doc told me that it is covered by Medicare, which is the standard by which many insurance companies follow. however, some companies (as he noted bcbs) have listed hbo as experimental.. although it is a well known effective treatment... if my company denies, he said appropriate letters will be written to try to over ride the denial.. which he expects to be the case.

so i go on faith that all will work out... the costs are about $900 per day... 30 days gets a bit expensive for most of us.

the hospital attitude is full speed ahead. i've signed the financial papers, so they got me on the hook.

i wish your husband well and will look for your posts.

cu,
larryb

Larry,

Thanks so much for your quick response. That was my first posting, and I was nervous! We, too, are going full speed ahead. A call has been placed to the dentist who performed the root canal. From there we will go back to our RO as he seemed willing to help us with HBO if necessary.

Appreciate your kind thoughts! I look forward to reading about your progress.

Best to you,
Siouxbee

Wow! I logged on because I am at my wits end with what to do or who to call about my husbands teeth. He had all his back teeth taken out last December before treatment which he finished in April. since then, like you, he rinses his mouth out umpteen times a day and brushes as often but it has to been to no avail. his gums are receding like yours and has had infections also. He also has had tooth 23 and 24 come out and lost tooth 30 today. I asked RO for referral to dentist / oral surgeon but he had none. I know he will have to have the HBO prior to having his teeth removed but felt we should start with a doctor? We live in Atlanta and I have called around but had little response.

Are you under the care of dentist, oral surgeon, RO, MO? Where should we start? And are you getting permanent posts and dentures or just temporaries? Are you having all your teeth removed or just the one? And if you dont mind me asking, what age range are you in? Do you know if your HNC was HPV related?
I know its a lot of questions. I look forward to hearing anyone's experience or recommendations.

Siouxbee - Your husbands osteonecrosis just started? I thought that the risk went down with the passage of time so I had not considered the possibility?

Traci,

Actually I remember Gary posting soon after I joined this site 3+ years ago that teeth problems can take 4 to 5 years to develop post Tx. Have never heard that topic discussed since or at least I don't remember it. Ever since then I told myself that I would continue to wear my trays every night forever. My dentist had already told me that but Gary's post sealed the deal.

Hi Traci,

My husband received 70 rads of radiation plus the 3 chemotherapy treatments. Above 60 rads is higher risk for ON.

We spent another 3 hours at UCLA yesterday because the pain has been so bad. They pulled out 2 tiny pieces of bone. We are in for a long haul with his jaw. They are hoping with peridontal solution injected around the area 3 x's daily that the bacteria will be under control and pain will eventually go away. No guarantees from them, of course. We have to go back every 4 weeks for follow up to see if more bone is pushing up.

This was the first time the DDS mentioned HBO treatments. However, we will have to take up that issue with our RO.

Best regards,
Siouxbee

I am one that will follow your post to see how your husband makes out with the bone removal. Both sides of my lower jaw are just dead bone .

EZ Jim,

Do you have pain? What is your course of treatment? I know that my husband faces a long journey. I am so afraid of what is ahead as eventually he will have to endure chemo for CLL...probably by end of next year. He doesn't even have a doctor that is taking charge of him...it's all done thru the various specialists who, I doubt, even talk to each other about him. Yes, we have an HMO...but we've been very happy with the care he's received up to now. I feel we are in limbo with no one really looking out for him. I am going to send a letter to his radiation onc.. Right now he is under the care of the UCLA dental school for his jaw. They work with HN cancer patients referred by our HMO.
Siouxbee

a doc told me that the effects of radiation on jaw bone and gums accumulates with time....that is,it gets progressively worse. HBO treatments give a reset, however the deterioration continues. he said i would have a 3-5 yr window for dental treatments after HBO. then he would recommend booster HBO treatment before\during later treatments.

xrays show a shadows under my teeth to be pulled. the doc says this is probably infection.. however he will do a biopsy to ensure that its not a dead bone issue. we will deal with that as we proceed.

i have no idea if what he said agrees with mainstream treatment. i would like to know more about this topic... and appreciate all comments.

cu,
larryb

Hi Larry, I may be able to help you with HBO. Ive done 85 of them. I cant say enough good things about HBO. It made me feel like I was a new woman, like before I got sick. There have been many threads about HBO. You must type it out or you wont get any results. Here is some info that should help you....


http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=81566#Post81566

hi ChristineB,

thanks for the link and for the suggestion to search using hyperbaric.. i didn't search because my spelling can be terrible, however your link had the word spelled out - so i copied.

i look forward to the treatment and hope that it cures the recurring problem that i've been having with infections.

cu,
larryb

by the way, my siter was a ChristineB till she got married. her birthday is Christmas Eve. reminds me of my buddy at work, HosA,,,, not HosB.. cu, larryb enough already.

It's been a while since I posted but have a lot of experience with HBOT.In 2004 I had to have two teeth removed from lower jaw #18 and #29 and had 30 dives. Every thing went well and healed properly.Four years later,I started getting receding/bleeding gums on my lower right teeth and had to remove #26,#27,#28 and also had an infection.I had significant oral surgery to get it all cleaned out and had what looked and felt like the Grand Canyon in my mouth with exposed jaw bone.I did 60 dives (the most allowed)and after 6 months it completely healed over.I had vision problems from that many dives. One eye finally got back to normal but the other one didn't.The boredom and time commitment are the two biggest
issues with the HBOT.

hey fogelbergfan,

i've been wondering about my ability to retain other teeth due to potential stuff like you had develop... i would hate to pull good teeth now, yet i wonder if i'm fighting a loosing battle and just setting myself up for more dental problems... and you bring the vision problems closer to home too.

based upon your experience, would you recommend that someone like me put priority into doing more dental work sooner -rather than waiting and hoping?

i'm glad that you got some vision back...
thanks for your input. it is invaluable to hear.
happy holidays..
cu,
larryb

Orthoradionecrosis of the jaw I think is the name for the "dead" bone. It is a serious problem because it interferes with the healing of any dental procedure. My oral surgeon has said to wait until I have a real problem and then he would probably treat with root canals. Watch out for any other medications that you might get. Especially medications for osteoporosis, most of which are bisphosphinates wich cause osteonecrosis of the jaw so it will make the problem worse or vastly increase the possibility of haveing it. BTW, to my knowledge necrosis of the jaw is not diagnosable from x-rays.Clark

forgot to ad that I did not have the option of HBO because I was not insured for many years after my surgery and radiation. By the time I got o the VA 3 years ago it was too late.

hey Clark,

thanks for the info. hope you are doing better now.

my dentist is planning to do biopsies to asses if i have orthoradionecrosis of the jaw and i think to see if there is any infection. i've been on anti-biotics for several weeks now and seem to be responding very well.

cu,
larryb

My oral surgeon has me use Peridex rinse twice a day.It kills certain bacteria that can cause infections. He said to plan on me using it the rest of my life......so that's a good 50 years or more......thank the Lord it's only $5.00 in generic form.

i'll check into the rinse... all tips like this one are really appreciated.

for my thrush control, a commercial rinse with hydrogen peroxide has been as effective as prescription meds.

I use the same peridex rinse daily.

That thrush is nothing to play around with. I wish I had known about the peroxide long ago. Do you use as a preventative or just as a Tx?

I use Nystatin once a day daily. Seems to work.

Take care,
Eileen

hi Dave,

my ent put me on prescription meds for thrush... as the meds were ending, my pharmacist suggested a mouthwash with hydroperoxide. during a several week period, i saw continued improvement.. so i extended the treatment on a daily basis and over the next couple of months, my thrush problem effectively was gone. i have continued using the mouthwash,,, however i took a couple of weeks break and perhaps the thrush started to return... so i have gone back to using the mouthwash daily and plan to stay with it.

the mouthwash is sometimes available at my pharmacy. i have not been able to find it at other locations around town. because my pharmacy often is out of stock and has delays restocking, i have ordered a case from the producer and it has been delivered to my home as expected.

as a non-chemist, dumb head... i speculate that thrush is a fungus and likes a reducing environment... the oxygen from hydrogen-peroxide upsets the reducing environment - so bye bye thrush.

cu,
larryb